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Michael
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| Joined: | Sat Jul 17th, 2004 |
| Location: | Arkansas USA |
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Posted: Thu Dec 2nd, 2004 15:35 |
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I too would like to know the answer to Marianne's question...
"But are you meant to feel better compared to your baseline before moving to Phase 2?"
I think it is critical to making the decision to move on to the next phase.
Thanks, Michael
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Dr Trevor Marshall
Research Team
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Posted: Fri Dec 3rd, 2004 02:34 |
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Michael,
Most people that start phase 1 move forward to phase 2. Most have worked through the herx of phase 1 and realized that the description I have given them is what they experienced, and they trust that the same correlation will occur during phase 2, at least until they work down the bacterial load sufficiently to realize real, tangible gains at about months 6-9.
But nobody is forcing you to implement the MP. If at any stage you feel that you have better treatment options you should take them. You can always come back in a year or so, when the MP has established its track record even more clearly.
..Trevor..
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Marianne L.
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| Location: | Skive, Denmark |
| Posts: | 65 |
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Posted: Fri Dec 3rd, 2004 14:52 |
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Thanks Trevor,
I’ve requested the Phase 2 questionnaire from admin and should get the new guidelines when I return it (if I’m deemed ready). I only have a copy of the ”old” Phase 2 guidelines which warn of a potential strong herx which could last for weeks and that’s what I based my decision to wait on. But I’ll have a look at the revised guidelines and see if I can proceed sooner without too much risk of ruining Christmas completely – mainly because I’d like to be able to be mentally present for my children (aged 3 and 7, there’s been so many things I’ve been unable to share with them since falling ill - just before the little one’s first birthday - so I try to participate in ”big” things). Anyway, must admit I’m keen to proceed even if it means more ”punishment”, the potential reward at the end compared with my present state of health makes it more than worthwhile for me to try.
Michael – are you presently on the MP? It’s a long haul, but no longer than any other chronic Lyme treatment I’ve heard of (and I think it's much the same with other Th1 diseases, though admittedly I haven’t looked into them). Anyway, best of luck whatever you’re doing/decide to do!
Marianne
Last edited on Fri Dec 3rd, 2004 14:57 by Marianne L.
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Paula Carnes
Member in Phase 2/3
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Posted: Fri Dec 3rd, 2004 20:12 |
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Michael,
This is how I decided to move to Phase 2. I waited until I felt about the same while on 100 mg of minocycline every other day. I did not feel worse one day and better the next - just about as bad both days. LOL I am serious. I have not had much improvement until now about 2 months into phase 2.
I hope this helps a bit.
Paula Carnes
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Michael
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| Joined: | Sat Jul 17th, 2004 |
| Location: | Arkansas USA |
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Posted: Sat Dec 4th, 2004 17:39 |
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Trevor, Hey go easy on me.
I don't feel forced into the MP. I have been on it since May 1, 2004 and am in strict compliance (though not at first, which cost me 2 months). I don't understand why you didn't answer the question and chose to take a shot at me. I support your work, introduced 2 doctors to it and numerous patients. I hope you have confused me with someone else.
Best, Michael
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Michael
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Posted: Sat Dec 4th, 2004 17:48 |
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Paula, Thanks, it helps knowing that you hadn't seen any improvement from your baseline until 2 months into Phase 2.
I'm in this for the long haul but after 7 months on Phase 1, it's hard to resist trying to speed things up. Also, after 30 years of illness it is hard to recognize a baseline, no less a herx!
Marianne, thanks for the encouragement. Best of luck to you too!!
Michael
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Dr Trevor Marshall
Research Team
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Posted: Sat Dec 4th, 2004 18:40 |
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Michael,
I wasn't taking a shot at you, sorry if it read that way. I was merely stating the obvious, but often overlooked, fact that nobody is forcing anybody to go onto the MP, or to progress to health. We are providing a service here, to assist folks who have made that choice 
..Trevor..
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Foundation Staff
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Posted: Sat Dec 4th, 2004 19:31 |
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Michael,
Paula's reply to Tobi about when to move on to phase two might be helpful to you:
"Tobi,
This is how I interpret when you are ready to move to phase 2. You are protecting yourself and especially your eyes from sun/lights. You are on 100 mg of minocycline every other day AND
Your symptoms are pretty much the same during those two days. If your symptoms tend to vary up and down you should stay on the mino longer. But if you are stable (you may feel bad, but consistently bad) then you want to move to phase 2. The reason is that minocycline alone with the Benicar is NOT enough to get rid of the bacteria. You must add another antibiotic in phase 2.
I hope this helps. Don't wait until you feel well to go to phase 2 because that will not happen on just Benicar and minocycline. YOu just want to feel stable.
Paula Carnes
I would just add that some people do feel better at the end of phase one and that before you go on to phase two, you should be ready to feel a little worse.
Best,
Meg
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Marianne L.
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| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
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Posted: Wed Dec 15th, 2004 15:59 |
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I’m now 68 hours into Phase 2. So far there’s been an increase in aches (shoulders, neck, arms, back) and very significant chills which remind me of when I started mino. Have also recently developed slightly sore/strained eyes in situations that didn’t bother me a month ago, like watching TV.
Anyway, the reason for my update today is that I just had some control blood results back. My 25-D has dropped by a bit more than half since 14 June which concerned my GP (general practitioner) because it’s now below the reference range. He said that normally he would recommend strong supplementation but said I should check with people who know about the MP when I explained you actively strive to lower 25-D when on the protocol. He wanted to re-check 25-D in February.
My doctor also said my blood count was a bit low and has ordered numerous additional tests for iron level etc. Here are some of the test results I got today – hope I picked the relevant ones, had an abundance done but all were within the lab’s normal range except 25-D and B-haemoglobin-conc. Blood was drawn on 7 December:
B-haemoglobin-conc.: 6.9 nmol/l (range: 7.4-9.6) (14 June: 9.1)
Creatinin;P: 79 µmol/l (range: 45-80) (14 June: 58)
Vitamin D;P: 32 nmol/l (range: 45-150) (14 June: 66)
Questions:
- Do you see any cause for alarm in these numbers?
- Is iron an ok supplement when on the MP (in case my doctor suggests it upon further testing)?
- Is there a minimum that 25-D shouldn't go below?
- Should I keep on diligently avoiding all sources of vitamin D now my level has been significantly lowered?
I have a feeling at least some of the answers are on this site, but sorry, I’ve searched and haven’t been able to find them. Any feedback very much appreciated.
TIA
Marianne
Last edited on Wed Dec 15th, 2004 23:27 by Marianne L.
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Reenie
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| Location: | Phoenix, Arizona USA |
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Posted: Thu Dec 16th, 2004 03:09 |
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Hi Marianne,
Your D is FINE. You'll want to lower it MORE. That will happen in time. 
As for the rest of your labs:
Meg says, "Your lab results need to be considered with your medical condition in mind. Many of the sarcoidosis patients have learned of inflammation in the kidneys only when they started the Marshall Protocol. The increase in inflammation as the bacteria die, can cause a rise in BUN or creatinine indicating a temporary decrease in kidney function. These numbers improve when the kidney inflammation resolves. Unfortunately, this is the only way to resolve the subclinical kidney inflammation that would most certainly worsen without treatment.
It is very common for the red blood count to be abnormal in Th1 inflammatory diseases. I, for example, am borderline anemic and have a monoclonal gammapathy of undertermined significance (MGUS). Regarding blood counts,Trevor has said, "It is best not to get fixated on any expectation of 'bad figures' and 'good figures'. If Doc gets too concerned about the numbers then, IMO, you should back off your antibiotic dose and take the therapy a bit slower."
There is good reason to expect that abnormal blood counts will normalize as the inflammation resolves."
http://www.marshallprotocol.com/view_topic.php?id=1281&forum_id=11
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Posted: Thu Dec 16th, 2004 03:55 |
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Marianne,
It is essential to evaluate the level of Vitamin 25-D (the inert percursor) in reference to the level of Hormone 1,25-D (the active metabolite).
Avoiding all forms of ingested Vitamin D will decrease the amount of 25-D stored in fatty tissues. This is desirable because less 'fuel' will be available for inflamed tissues to use to produce excess 1,25-D.
Since 25-D has no function but to enable 1,25-D to be produced, if you have enough 1,25-D, then you do not need any 25-D.
Persons with Th1 inflammation produce excess 1,25-D directly within the kerotinocytes in the skin and the renin-angiotensin system of the eyes when exposed to sun/lights. No 25-D is necessary for this production.
Fatty tissue stores of 25-D are nature's way of providing normal people the means to produce 1,25-D if they are unable to get any exposure to sun/lights. Normal people in northern climates sometimes need the 25-D fatty stores to get them through the winter when their exposure to sun/lights is less. They need an adequate supply of the precursor because they do not have inflammatory tissues that are producing excess 1,25-D independent of regulation by the kidneys.
Supplementing with Vitamin D does not increase Hormone D to excess in normal people because, without the production of 1,25-D by inflammatory tissues, their kidneys are able to keep the level of Hormone D tightly regulated. A fatty tissue excess of 25-D, however, in persons with Th1 inflammation allows the inflammation to rage on even if there is no exposure to sun/lights.
Persons with Th1 inflammation are 1,25-D producing 'factories' and can get along quite nicely without any 25-D.
Trevor has said, "Mild 'anemia' is expected in the Th1 diseases, as inflammatory macrophages accrete ferritin. Supplementation usually doesn't correct the 'anemia' and it feeds the inflammation."
Your lab tests are not unusual considering your disease process. There is no need for supplementation of either Vitamin D or iron. The anemia should resolve when the inflammation resolves.
Best,
Meg
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Marianne L.
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| Joined: | Fri Jul 16th, 2004 |
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Posted: Thu Dec 16th, 2004 06:58 |
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Thanks so much for your replies, Reenie and Meg, it’s good to have thorough answers and explanations on hand for my GP. He’s not really familiar with the MP but is happy to help me monitor kidney and liver function etc. whilst on therapy. He obviously wants to make sure I’m alright but is open (I think, he was certainly receptive to the D-issue and respects my choice to pursue this therapy) to good explanations why certain things must/will happen. I just need to be able to provide those explanations. Thanks once again!
Marianne
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Marianne L.
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Posted: Wed Jan 5th, 2005 16:21 |
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I’m now three days into my third phase 2 ten day cycle. For the first two cycles I stayed on the initial dose of abx – I didn’t want to risk spoiling the holidays – now I’ve moved up to level two.
I’ve experienced ongoing strong chills, pounding – but not irregular, fast or slow – heart beat, very stiff/sore neck and shoulders and a general feeling of malaise and exhaustion (though I’ve also had some moments where I was surprised at how energetic I felt). On day 9 of the first cycle I experienced vomiting and severe IBS but I’m unsure if this wasn’t just a stomach bug rather than herx. Anyway, it made me hold on for two extra days before starting the second cycle. Otherwise not much to report. Onwards and hopefully soon upwards!
Marianne
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Reenie
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| Location: | Phoenix, Arizona USA |
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Posted: Thu Jan 6th, 2005 01:26 |
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Marianne,
Since herx begins to hit on the 3rd day and will hit again harder on the 5th day of your Z cycle, it sounds as though your strongest herx on this Z cycle hasn't hit yet.
If you feel at day 3 it's already a little stronger than you want, you might try backing down on your mino dose from 100mg to 50mg, qod, since the M+Z work synergistically. Then, you could try taking your next Z dose w/50mg, qod if you thought this was more tolerable.
If you do decide to lower your mino, stay at the Z dose you're currently on until you can ramp the mino back up to 100mg qod before increasing your Z dose.
In addition, you may want to increase your Benicar dosing to q4h, if you're having a cardiac herx.
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Marianne L.
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Posted: Sat Jan 8th, 2005 11:41 |
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Thanks Reenie,
I woke today with much dizziness when I turned my head, even lying down on my pillow. I haven’t mentioned it before as it’s not amongst my main disabling symptoms but dizziness when changing position of my head has been with me since I fell ill so I’m absolutely sure it doesn’t originate from Benicar (blood pressure lowering medicine) but is part of the disease itself. That it’s currently increased I take as a sign of herxing and as it’s now a bit more than I wish to tolerate, I’ll take your advice and reduce the mino temporarily.
Thanks again,
Marianne
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Marianne L.
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Posted: Thu Jan 20th, 2005 08:43 |
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Just a quick update on my bloodworks. I had some tests done in December which showed I had become slightly anemic and that my creatinine level had gone up quite a bit since starting the protocol in August (it was still just within normal range, though). My GP then ordered some further tests, incl. for iron deficiency. Meanwhile I showed him answers from this site re. my test results and why they were to be expected.
I just discussed the results of the follow-up testing with him (done 4 January): He said the numbers were still slightly skewed but not alarmingly so. No further evidence of iron deficiency found. He’ll test again in February, though, just to keep an eye on things and make sure my body can keep up with treatment – if it shows signs of seriously struggling, I’ll slow down treatment temporarily to allow it to ”catch up” but so far things seem to have stabilized as predicted.
Marianne
Last edited on Thu Jan 20th, 2005 15:43 by Marianne L.
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Foundation Staff
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Posted: Thu Jan 20th, 2005 14:41 |
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Marianne,
Trevor has said, "Mild 'Anemia' is expected in the Th1 diseases, as inflammatory macrophages accrete ferritin. Supplementation usually doesn't correct the 'anemia' and it feeds the inflammation."
The Herxheimer reaction can also cause temporary anemia. I have this documented in my medical record when my Hgb and Hematocrit were lower than their usual borderline low for just two weeks.
Best,
Meg
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Marianne L.
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Posted: Thu Feb 17th, 2005 14:26 |
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I’m 6 months into the MP and am on the 6th day of my 7th Phase 2 cycle. I remain on the second level of Z and have been on that dose for five cycles now. I still herx noticeably on B + M + Z (e.g. strong chills, night sweats, dizziness, occasional headaches, occasional shooting pains in foot soles, aches in shoulders, arms, neck and back, and fatigue). All the herxing makes it difficult to identify progress, still upon reflection I’ve come up with the following status:
- I now have the fine motor skills of a 6-year-old. Hardly a cause for celebration when you’re 38 and not where I want to be by a long shot, but considering they HAVE been like a 2-year-old’s, it’s a move in the right direction
- my speech remains painfully slow, unclear and monotonous, but still it must have improved some because now I find myself actively engaging in conversation – before I would only reluctantly answer when spoken directly to, I just couldn’t face the agony of repeating myself five times before people got the gist of what I was trying to say. Being understood doesn't seem so much of a problem anymore
- people have commented that I seem more like my former self now, that my eyes are less ”glazed over” and I’m more “there”
- I’m slowly regaining the inclination to LIVE and not just be alive. After falling ill and becoming seriously disabled in the space of a few months I became completely withdrawn and didn’t want to participate in anything. Now I find I actually (occasionally ) FEEL like leaving the house. The other day I even went out to vote in the Danish general election. And I’ve been to the hairdresser for the first time in over two years. And am now considering getting highlights and a perm. Which wouldn’t matter at all, except that for ages I couldn’t care less how I appeared, so it tells me I’m beginning to see myself in some sort of social context again. If I’m not careful people will actually soon see me wearing my NoIRs…..it wasn’t so difficult to comply when all I wanted to do was stay in my cave - alone - anyway……
Marianne
Last edited on Thu Feb 17th, 2005 19:05 by Marianne L.
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Aussie Barb
Research Team
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Posted: Thu Feb 17th, 2005 18:36 |
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Thanks for posting your observations Marianne. It is plain terrible what we have had to call *living*..
all the best for more improvement, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Fri Feb 18th, 2005 00:08 |
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Marianne,
Thanks so much for sharing, and for posting your pic. It's nice to see who we all are, especially, since, many of us have been leading such isolated lives due to this dreadful disease.
BTW, I noticed you say you're taking B+M+Z. To avoid any confusion, I believe you're referring to Benicar as the "B"?
Since B is often referred to one of the abx in Phase 3, I wanted to be sure to clarify to anyone reading your posts.
Thanks again for posting, and go get those highlights done. It'll be a real morale booster, I'm sure.
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